Better patient advocacy. 1: Standing on the shoulders of giants

It is an article of
faith in science that discoveries build upon previous knowledge. Sir Isaac
Newton, discoverer of gravity inter alia, expressed this better than most when
he said “if I have seen further it is only by standing on the shoulders of
giants”. In essence, whilst downplaying his own contribution, he
acknowledged the nature of scientific research, discovery building upon
discovery.

This is an important
concept and equally valid today. Science does not reach conclusions without
building upon solid foundations. Often those foundations are bound together by
knowledge from different branches of learning. In some ways even that diversity
may contribute to the strength.

In recent years, we
have seen a substantial conceptual shift in the role of patients in medical
research and discovery. Patients are evolving away from their traditional role
as the guinea pigs of the scientists. Increasingly patients are involved in
reviewing scientific applications, contributing to the process itself as often
as not. There are even whisperings of patient driven and patient initiated
research in the near future.

In many respects,
these role shifts are the result of many years of patient campaigning and
advocacy. We, as patients, take it as our right to be involved at the very core
of the research endeavour. In essence we adopt the age-old motto “no
decisions about us without us”. Like a country’s constitution, we hold it
as quintessential that we have the right to represent ourselves, that nobody
should speak on our behalf. To all intents and purposes, we demand parity with
our scientific colleagues.

And herein lies the
problem. We are not scientists. We are in essence asking for roles and
responsibilities that in many cases we are not ready to implement. Put bluntly,
we are often out of our depth.

Don’t get me wrong –
I believe entirely in the principle of patient involvement. It’s not that it is
the best way forward so much as the only way forward. Research about patients
without patients is an absurdity. Of course patients have to be involved. We
just need to find out how.

Let’s return to
Newton for a moment, his apples and his giants. Or more accurately, their
modern counterparts in their laboratories around the world. When writing grant
applications or research publications, it is taken as read that the modern
research scientist is absolutely up-to-date on the latest research elsewhere,
that they can recall their findings and place their own work in its appropriate
context. In essence, they know the exact identity and detail of the giants upon
whose shoulders they are standing. Research is iterative. It has to be. It
builds on previous discovery and projects forward by inspired intuition and
happy informed guesswork. Knowledge and understanding of “the
literature” is imperative.

Theories created in
isolation rarely find favour. Not because they are necessarily inherently
flawed but because they fail to acknowledge the importance of previous
discovery.

At worst, this
amounts to rediscovering the wheel. Not surprisingly, grant awarding
authorities take very little interest in work that shows such poor scholarship.
Publishers likewise spurn manuscripts that fail to acknowledge the primacy of
others’ work.

But what, I hear you
ask, does this have to do with patients and patient involvement in research?
We’re not scientists, you say. Certainly, but we aspire to equality in respect
and understanding. And although we have those aspirations and seek those roles
we are not, as I stated earlier, universally equipped to do so. And I believe
the reasons for this are simple. We, as patients and advocates, stand at ground
level. We do not stand on the shoulders of giants.

Parkinson’s is a
cruel mistress. As the years go by post diagnosis, we shift from timid
ignorance to vocal experience before gradually disappearing again, raging
against the dying of the light. It is one of the most brutal ironies that one
reaches the greatest understanding of the condition only as one’s ability to
communicate that knowledge dwindles to the sound of silence.

This is the problem.
These are our giants if we only but recognised them. And, if you will excuse
the following excruciating mixing of metaphors, we rediscover the wheel because
we do not stand on the shoulders of giants.

Let me personalise
this. I have had Parkinson’s for around 13 years. During that time I have
witnessed – even been part of – many initiatives aimed at improving quality of
life, better understanding the condition and even hastening a cure. Often these
initiatives were led by advocates now gone. And as they faded away, so did
their ideas.

And every few years, a new generation would appear, full of energy and inspiration, brimming over with “I’m different, I’m going to beat this thing”. And as the new generation of leaders emerged, so did their followers. Chat rooms and discussion groups would emerge, with different names but strangely familiar content. Old issues have been recapitulated.

But the one thing
signally absent in this process is communication between those dynamic young
firebrands and the flickering embers of the old guard. The young were too busy
to listen to the old and the old too self absorbed with simply surviving for
there to be meaningful exchange between the two.

This is a terrible
state of affairs. The older, or perhaps I should simply say more experienced,
patients have walked the same roads that the youngsters now tread. If the youngsters
looked hard enough, they would see their footprints. They would see where
discoveries had been made or ideas refuted.

But this isn’t about
the inability of the newer generation to listen to their forebears. It is as
much an admonishment of the older generation for failing to pass their ideas on
to those best equipped to implement them.

This is where we
differ substantially from scientists. Whereas their very success depends on
their knowledge of what has been done previously in their fields, this is not
the case in patient advocacy. The younger generation are not absorbing or even
aware of the treasure chest of knowledge to be tapped by conversation with the
previous Parkinson’s advocacy generation so to speak. And the older generation
are failing to show the youngsters where the treasure chests are. This I
sincerely believe is essential if we are ever to claim our rightful positions
at the tables of research charities, policymakers and discoverers. We have to
find ways to build on the experience of previous generations. Only then will we
truly be standing on the shoulders of giants.